CHRONIC FATIGUE SYNDROME
Introduction
Chronic fatigue syndrome (CFS) has become one of medicine's most recent mysteries. First dubbed the Yuppie flu in the 1980s by the media because it seemed to strike the young and the ambitious, especially women, the condition continues to perplex and frustrate patients, physicians, and researchers.
CFS sufferers are plagued with a debilitating fatigue that can persist indefinitely. Their flu like symptoms--fatigue (lack of energy), malaise (feeling bad), muscle aches, sore throat, low-grade fever, and swollen lymph nodes--often continue long after what they thought was merely a bout with the flu, mononucleosis, or some other infectious illness.
Depression, a common companion to many chronic conditions, can accompany the other symptoms of CFS. So can cognitive problems, like confusion and forgetfulness, as well as sleep disorders. Theories abound as to the cause of CFS, but so far, no one has come up with a definitive answer. Is it a virus? Is it encouraged by a genetic tendency? Is it triggered by stress? Is it a malfunction of the immune system? No one knows. Even the diagnosis of CFS is murky, with no available blood tests or X rays to say "Yes, this patient has CFS." Instead, it remains a diagnosis of exclusion--that is, your doctor must rule out other conditions, such as anaemia, multiple sclerosis, thyroid disorders, lupus, and even cancer, that can cause similar symptoms.
"The symptoms of CFS are so similar to those of other conditions," says James F. Jones, M.D., professor of paediatric medicine at the University of Colorado School of Medicine and staff member at National Jewish Centre for Immunology and Respiratory Medicine in Denver. Indeed, chronic fatigue is one of the most common complaints doctors hear from patients. Some news reports have hinted at epidemics of CFS. Yet there have been few cases of CFS spreading through a family, Jones says. He, along with many other researchers, doubts that the condition is highly contagious. "In fact, the condition may not be due to a specific infectious agent but to a host factor [something within the person who gets the illness], which allows the condition to occur," he explains.
If you suffer from CFS, what can you do? There is no cure. No one can tell you how long you'll be sick. The disease does not get progressively worse, and it's not fatal. In fact, you're usually sickest during the first year, often before you're even diagnosed. "You have to learn how to cope with the disease," says Orvalene Prewitt, president of the National Chronic Fatigue Syndrome Association, based in Kansas City, Missouri. "If a cure comes down the road, that's wonderful, that's icing on the cake. But in the meantime, if you've mastered how to live with this condition, you've done what you could." And sometimes, patients recover, points out Jones. "I've had patients who were sick three to five years and then get well. It can happen fairly fast sometimes." Here are the coping strategies recommended by the experts--physicians, psychotherapists, and patients. Some deal with the physical side of the condition, some with the emotional side of living with chronic illness, and some are simply practical tips. Together with your doctor's advice and care, they can help you live day to day with CFS.
Establish a partnership with your health-care team.
"Interview your doctor and see if it's a good match," recommends Meredith Titus, Ph.D., senior psychologist at The Menninger Clinic in Topeka, Kansas. "Ask when he'll take phone calls, when he returns them. Trust your intuition." Learn about your illness, too, and don't be afraid to ask questions.
Do what you can for your body.
Practice the basics of healthy living: Eat a nutritious diet, get enough rest, and participate in a mild exercise program, even if it's just a five-minute walk.
Grieve for what you've lost.
"You have to accept the fact you have a chronic illness," explains Sefra Kobrin Pitzele, author of We Are Not Alone: Learning to Live with Chronic Illness. "That means giving up who you used to be and accepting who you are now.
"Let yourself feel your feelings."
You have to go through the feelings of loss, of grief, anger, sadness when you learn you have a chronic illness," says Titus.
Don't blame yourself.
It's not your fault you're sick. "We're programmed in this country to believe we can overcome anything if we work hard enough," says Jones. "You can't let yourself feel guilty because you have this illness.
"Find support."
It really helps to talk to other patients," says Judy Basso, a CFS patient and president of the Chronic Fatigue Syndrome Association of Minnesota in Minneapolis. "You don't have to explain a lot of things, and you can't go through this feeling totally alone." She calls joining a support group "a lifesaver" that helped her get direction for her life. "You learn a lot from other people, and it also helps keep you from dumping on your family and friends all the time." She warns against some support groups that use the gatherings as a sales meeting for alternative products.
You might also want to consider seeking professional counselling, since depression often accompanies any chronic condition. "With chronic fatigue syndrome, it can be hard to distinguish between the feelings of tiredness and the helplessness and hopelessness of depression," says Titus. Talking to a therapist may help.
Spend your energy wisely.
Several patients talk of using their precious stores of energy like coins from a piggy bank. "You carefully ration every ounce of energy," explains Basso.
Set reasonable goals.
"If you're having a bad day, maybe your goal shouldn't be to get groceries, but to take a shower, get dressed, make a sandwich, and do the dishes," suggests Pitzele. "You may have to lower your expectations, but then you can be successful in meeting your goals.
"Be energy efficient."
I sit down on a stool in the kitchen, I don't stand," says Basso. "When I take laundry down to the basement, I take a book or the newspaper along and I stay down there on a couch, so I don't have to go up and down the stairs several times." Get a handicapped parking sticker; have your groceries delivered; hire someone to clean the house. Pitzele divides her groceries when she shops so the sack with canned goods can sit in the car for a few days until she can bring it in.
Schedule rest periods.
"One woman I know takes what she calls 'power naps' instead of power lunches so she can get through the day at work," says Basso. "It's critical that you schedule rest before and after activities." You have to learn, too, to listen to your body. "Lie down before it's screaming," says Pitzele.
Set priorities.
"Make a list of what you must do, would like to do, and what doesn't matter," says Pitzele. As patient Brian Lutterman writes in "Long Night's Journey: Coping with Chronic Fatigue Syndrome," published by the CFS Association of Minnesota, "When all your living must be done in a few hours a day, and with only a small amount of energy, you begin to realise what is truly important.
"Keep work and home schedules on the same calendar.
"You don't want to have a big meeting with your boss and a birthday party for your three-year-old scheduled on the same day," says Titus.
Learn to adapt.
"Maybe you're too sick to go to a movie, but you can ask a friend to bring over some Chinese food and watch a movie on the VCR," suggests Basso. "People who really love you don't care if you cook them a gourmet meal or send out for fried chicken," says Pitzele.
Realise you have limits.
"Remember that everyone--even healthy people--can't do everything," says Basso. Try to be realistic about what you expect from yourself.
Have fun.
"Keep your social outlets," says Titus. "Maybe you can't entertain your friends the way you'd like, but that doesn't mean you don't have something to share with them." Pitzele adds that it's "crucial" to make time for play. "If you have three hours of energy--work two of them, but spend one having coffee with a friend or taking a short walk. Keep the balance in your life.
"Keep a journal."
You don't have to write in it every day," Titus says, but "it will help you see the patterns. You'll realise how awful you felt on the darkest days, but that you moved past that and felt good again.
"Don't ignore your sexuality.
You may have to schedule sex for when you feel good, says Pitzele. "Night is not the best time--you probably feel better at lunch or in the morning before you get out of bed.
"Remember you still have choices.
"Exercise your choices," says Titus. "Those feelings of control help fight any feelings of depression.
"Keep your sense of humour."
The movies I watch, the books I read, are more upbeat these days. I'm dealing with enough difficulty and pain on a day-to-day basis," says Basso.
Live for today.
"CFS patients are living with the unknown, and living with the unknown is frightening because it reminds us we're out of control," Titus explains. "So maximise the known. If you feel good, then enjoy today. Live in the now."
CHRONIC FATIGUE SYNDROME Alternative Therapies Janet Bohanon, who became ill with CFS in 1975, estimates she spent $30,000 to $40,000 in search of relief during the first ten years she was sick. Her "treatments"--none of which worked--included herbal remedies, vitamin B12 shots, bee pollen, hair analysis, oral doses of hydrogen peroxide, a fasting diet of water and aloe vera juice, a three-year drug regimen based on the theory that a supersensitivity to yeast was to blame, acupuncture, a potassium supplement that tasted like "motor oil," and a $200 appliance that propels negatively charged ions into the air. She's also tried replacing her aluminium and Teflon cooking pans with glassware. She's had her water supply checked for lead. She's converted to hypoallergenic products. She's still sick. "Like a lot of CFS patients, I was vulnerable and I was desperate and I was willing to believe anything," Bohanon says. "Since cofounding the National CFS Association in 1985, I've learned how important it is to check out these supposed cures and treatments." She's not alone in turning to desperate measures. "It's such a frustrating illness," says John H. Renner, M.D., president of the Consumer Health Information Research Institute in Kansas City, Missouri, and a member of the board of directors of the National Council Against Health Fraud. "It's the perfect condition for the quacks to exploit. People get frustrated with the medical community because doctors can't offer a cure, and they feel like they have no control over their own health," says Renner. "Then someone comes along who says he has a cure, and he's warm and understanding, and the patient feels like, at last, somebody cares," he adds. Yet, ironically, many of the so-called treatments for CFS have merely been recycled from other incurable illnesses. "Some of the products once sold for cancer were then supposed to cure AIDS when it came along," says Renner. "Now they're supposed to cure chronic fatigue syndrome as well." He cites immune boosters, hydrogen peroxide, hyperthermia (a procedure that involves taking blood, warming it, and injecting it back into the body), and nutritional supplements. Some products may harm you only by emptying your pocketbook, while others endanger your health. "A nonfatal illness like CFS can turn into a disaster if you're not careful," Renner cautions. "Or you can worsen the symptoms." For example, taking the herb ginseng causes fatigue. How can you protect yourself? Be suspicious if:* The claims made for a product sound too good to be true. "If it sounds too good to be true, it probably is," Renner points out.* Testimonials rather than scientific studies are used to prove the product's worth. A disease can go into remission or the patient may feel better because of the placebo effect (a beneficial effect that occurs but that cannot be attributed to any special property of the substance).* You're told that "you're one of the lucky few to know about this product." Or it's a "secret" cure that medical professionals don't want to share with the public. "If a 'secret' cure for cancer existed, no doctor or member of a doctor's family would die of cancer," says Renner.*
Accompanying information warns against telling your doctor about using the product.* The product is sold through a multilevel marketing scheme.* Phrases like "oxygenate your body," "detoxify your system," or "cleanse your body of numerous poisons" are used.* The practitioner is clearly profiting from the product. For example, your doctor insists you buy vitamin supplements from his or her office rather than at your local pharmacy. James F. Jones, M.D., asks, "How can you treat something when you don't even know what's causing it? That's the crux of the whole issue. Relying on these alternative therapies is like playing the lottery.
"The Difficulty of Diagnosis Comedienne Gilda Radner was mistakenly diagnosed with chronic fatigue syndrome, which delayed the discovery of the ovarian cancer that eventually killed her. That's one of the worst-case scenarios that can occur with CFS. So if you suspect you may have CFS, you want to be sure your physician has ruled out any other condition that can cause similar symptoms. Because there's no diagnostic test for CFS, the Centres for Disease Control established guidelines in 1988 for its diagnosis. According to the guidelines, you must have suffered from debilitating fatigue that has reduced your activities by 50 percent for at least six months. And you should have at least eight of the following symptoms:* Mild fever or chills* Sore throat* Generalised muscle weakness* Muscle discomfort or pain* Fatigue that lasts at least 24 hours after exercise that's normal to the individual* Headaches that differ from those before the illness began in their type, severity, or pattern* Joint pain without swelling or redness* Forgetfulness, confusion, or inability to concentrate* Sleep problems, such as insomnia* Rapid onset of symptoms, usually within a few hours or days
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